Partners in Care: the effectiveness of the Help at Home service, provided by Age Concern Shropshire, Telford and the Wrekin
Introduction.
This report, written in December 2003 and reproduced here with permission, describes the results of a qualitative evaluation of the Help at Home Service provided by Age Concern Shropshire, Telford and the Wrekin. While the pretext for the research was an eveluation of the service, much of the interest lies in what the older people who used the service had to say about their lives and particularly about what independence meant to them as they grew old.
The Help at Home service, which continues to operate, provided help to older people who wished to live independently at home, but who require support with one or more practical tasks. The service aims to support the whole person in the environment in which they live, and thus to maintain social contact as far as possible in order to prevent social isolation, as well as to provide practical assistance with daily living tasks.
Tasks can be divided into four, often overlapping, groups:
· Domestic (including shopping, laundry, ironing, bed changing and making, mopping floors, changing curtains, and fridge / freezer care. different tasks are completed each week, depending on need).
· Gardening
· DIY and home safety tasks
· Visiting and befriending
A a comprehensive assessment of needs, which if needed can be referred on to other agencies or to other sources of help within Age Concern. As each of the older people in this study testified, access to social contact and to information are often as important as the more practical aspects of the service.
Contact is made weekly, fortnightly or in a few cases monthly. Most contacts last one hour at a time, which is enough to allow time for contact and communication to be more than just functional.
To be eligible for Help at Home, older people must:
The service started in October 2001 with an initial contract awarded by Shropshire County Council for three years. At the time of writing (December 2003) it employs 10 administration, management and assessment staff, and about one hundred home support workers, most of whom are part-time. In addition some 60 volunteers are involved. The service currently has over 450 service users across the whole county.
Background
There is an increasing awareness of the role of the voluntary sector in providing low-level preventative services for older people. This is identified, for example, in the Intermediate Care Guidance issued by the Department of Health (HSC 2001/001: LAC ((2001)1) (DoH January 2001), which urges that the NHS and councils should work closely with agencies in the voluntary sector to seek alliances that complement and extend the roles beyond the statutory sector. The theme within this and other key documents (for example, the Social Services White Paper (DoH 1998), the NHS Plan (DoH 2000) and the National Service Framework for older people (DoH 2001)) is the promotion of independence as a key goal of services. The drive is to generally reduce ‘dependency’ on services which, through processes such as the ‘vicious circle’ identified by the Audit Commission (1997), either fail to provide timely and appropriate intervention and review, or encourage long-term usage of services. Such a process is seen to effectively de-skill older people and make them more, not less, vulnerable to crises, and to incur expensive and ‘unnecessary’ interventions in their wake.
In recent years there has been an increasing focus within policy on the social and emotional factors influencing health. The green paper, Our Healthier Nation, for example, demonstrated recognition of the fact that being ‘well’ involves making “the most of the opportunities that life has to offer and (playing) a full part in community and working life”. Indeed, it states that the condition of healthiness itself includes, “being confident and positive and able to cope with the ups and downs of life” (DoH, 1998).
Being an active citizen, more than a recipient of services, is an important part of being healthy. For those who need them, services such as home visiting, befriending, or day services and lunch clubs are widely recognised as effective, to one degree or another, in replacing or contributing to essential networks of family or friends. As such, they help older people to overcome problems of low morale and confidence, and to seek practical solutions to problems of isolation and difficulty of access. They can help older people to link in with networks that have been lost or to create new ones. Practical activities, too, such as housework, shopping or walking – while they may not in themselves provide direct links to social networks – nevertheless provide opportunities to enhance self-esteem through feelings of independence and dignity. Such opportunities have the potential to mitigate or eliminate the effects of stress associated with social isolation and loneliness, and thus to improve health in some cases.
Age Concern has traditionally worked to promote the greater involvement of older people in society, both at an individual and a collective level. They do this by a number of means, including information and advice services, and ‘capacity building’ initiatives, as well as through direct care services. A number of reports have been produced that review the effectiveness of Age Concern services in promoting independence (e.g. Le Mesurier, 2002, 2003a, 2003b). These contribute to a growing body of literature that suggests the strength of an older person’s social and support networks is directly related to their ability to cope with increasing frailty. A study in Israel, for example, explored the relationship between social network type and morale in over 2000 older people (Letwin, 2001). Those older people with broad networks that included a wide range of friends as well as family reported higher levels of morale than those with exclusive family or restricted networks. Certain network types were found to be second only to disability in predicting morale, a finding which further reinforces the value placed by many older people on friendships and relationships of their choice in addition to those with their families (Langan, et al, 1996).
Shifts in network type, from independent towards more dependent network types, are found to typically increase with age due to the influence of increasing frailty, physical or mental impairment. The strength of social contact with close family members, friends and neighbours, and also with community groups, has been shown to have a positive influence on the extent to which older people are able to remain independent and active (Wenger, 1994.)
However, there is evidence that some services fall short of recognising the value of independence for many older people. Independence can be defined in many ways; positively as the opportunity “to make…choices about what constitutes an acceptable quality of life”; alternatively as avoiding being a ‘burden’ on others (Cattan, 2002.). It is not about ‘doing things alone’ or without help, but about having a sense of control over one’s life.
This theme is echoed in Clark et al’s (1998) seminal report: That Bit of Help: the high value of low level preventative services. This stresses the importance placed by older people on maintaining their own independence at home. The two terms have powerful overlapping meanings. Home is seen as a place where it is possible to exercise choice and control over what, when and with whom individuals conduct activities that are meaningful to them. It is often regarded as “the final boundary of independence.” For older women in particular, ‘keeping the house up’ and maintaining personal standards of cleanliness and tidiness are important constituents of identity and public persona. The report argues that such ‘trivial’ matters as having clean net curtains and of doing one’s own shopping are issues of self-respect; yet care agencies inadvertently marginalise such matters by administering only to the most immediate of needs. They provide care, which is associated with a loss of independence, when what is often wanted is help, which maintains independence.
The desire to maintain independence manifests in the things older people say they want from services (Cattan, op cit.). Her interviews with users of services for groups of older people identified a common desire to be more involved in their planning and delivery, and a wish for meaningful and purposeful activities. Involvement did not have to be large: feelings of control could be enhanced for some people simply by the opportunity to suggest alternatives. At the very least they wanted to feel a resource, and to contribute. Few services, however, consistently involved older people, and most referred to them opportunistically.
Many older people find it difficult to ask for help, particularly if they find such requests demeaning or they are not fully conversant with the complex systems and procedures operated by local services. In order to reach older people who are vulnerable before crisis makes expensive and often traumatic intervention inevitable, services need to take a pro-active approach and to invest in ‘low level’ services that provide the kind of help that older people want to keep them active and involved. Many health and local authorities fail to do this, constrained as they are by budgetary and procedural restrictions that focus care provision only on the most ‘needy’. It is therefore essential that service provision be seen as a process of inter-related services, not as discreet, ‘protected’ functions. The voluntary sector has an important role to play in providing ‘first contact’ and low-level support services for older people that are often beyond the scope of the statutory authorities.
Old age is a time of changing identity. The boundaries of independence change as circumstances and capacities are affected. Social isolation may increase as friends and partners die and this can be detrimental to life satisfaction and, relatedly, to mental health (Sidell, 1995). Such changes can leave some people feeling very vulnerable. Companionship, the daily patterns of routine interaction, the sense of security in having someone else around, someone to share pleasures with as well as concerns, these are often lost when family, friends and partners die. No amount of alarms and other security devices (though these are valuable and often essential) can replace the ‘human touch’ in providing a sense of security.
At the same time it is important for older people to know that it is possible to get help when it is needed, from a source that is familiar and accessible. Likewise, the opportunity to discuss a problem or confide in someone who is familiar yet independent of family members, whom many older people are reluctant to ‘burden’ with their worries, is valuable.
Clark et al (op cit.) express it succinctly. “Knowing that help is available before a crisis point is reached and having ready access to that help can make all the difference. ‘Knowing’ depends on having access and information, and this can be a problem for older people outside the network of, for example, luncheon clubs and community centres.
Help at Home shares many of the characteristics of other services provided by Age Concern, not least in its emphasis on the involvement of older people as partners in their own care. As the evidence from this qualitative study shows, the social interaction received alongside the practical assistance is something that service users value highly. This is not just a matter of a ‘bit of chat’ on the side while the worker gets on with the ‘real’ work of domestic chores. It reflects a sense of security and of involvement that may have a direct relevance to physical and mental health, with possible consequences for service costs as well.
The aim of this report
The commission for this report came with a clear brief to avoid duplication of existing audit data. Rather, the desire was to understand more of the nature, meaning and value of the service for a small sample of service users, what led them to it, and what influence it had on their sense of independence.
The methodology chosen was a series of in-depth interviews with ten older people who were current users of the service. The commissioners identified a series of questions:
· What led to your decision to seek help?
· Why did you approach Age Concern?
· What do you think about the service?
· What difference has the service made?
· Have you recently been to a doctor or hospital?
· What other services have you used in the last 12 months?
· How independent are you?
· Are there things that could happen that would make you more independent?”
In order to allow participants to speak freely about their lives and the role of the service within it, an interview schedule was constructed that grouped these questions into five broad areas of interest:
· Factors precipitating take up
· Experience of accessing the service, and of accessing and negotiating other services
· The value of the service to them in the context of their daily lives, and of their identity as (older) people
· The impact of the service on the need for other services.
· The meaning of independence for respondents.
Interviews were conducted in the respondent’s own home, at a time convenient to them.
Participants in the study
In the first instance, a sample frame was identified consisting of a cohort of clients who had indicated at the time of initial assessment they would be willing to be contacted for monitoring purposes, and had received an initial assessment during September or October 2002. This identified thirty-one older people.
From this, a purposive sample was taken of ten service users, the size of the sample having been determined by the commissioners. Selection criteria included location, gender, age and range of tasks provided as part of the service. As the majority of service users at the time lived in the Shrewsbury or Ludlow & Church Stretton areas, an equal number of service users were identified from these locations. These individuals were then approached at first by the service manager and then, if they agreed, by myself by letter and telephone to arrange an appointment. Confidentiality was assured at all times, both verbally and in writing, as was the right to withdraw without penalty, and all participants were offered a copy of their interview either in audio tape or transcript if they wished.
The ten older people recruited to the study varied considerably in their needs and circumstances, though the majority were aged over 80 and each lived alone.
Themes from the interviews
Rather than ask a series of direct questions requiring closed responses, the interviews presented a series of open questions to encourage discussion. Each opened with an enquiry about how the respondent had come to contact Age Concern in the first place, and proceeded from there to cover the key topics: their experience and views of the service, what made it valuable for them, their experience of other services, and what for them constituted independence.
It quickly became clear that direct questions requiring comparison between the Help at Home and other services did not elicit a clear response, and that many participants had either little in or experience of other services. From their point of view, they, or others close to them, had made an informed choice to approach Age Concern in the first place, and they valued the service not by comparison with other services, but in terms of what it did for them ‘here and now’. Participants therefore found it easier to talk about the service and how it fitted in with their lives, including the constraints they were under and the opportunities they enjoyed.
One factor that shone through almost all the interviews was that, for these older people, the service was rarely seen in functional terms only, but was valued as much for the social contact it offered, which had psychological benefits and created a sense of enhanced confidence and ‘belonging’, as it did for the practical benefits it offered. Their outlook incorporated a dynamic interplay of physical, mental, social and spiritual conditions. Problems were rarely discussed in isolation, and solutions were often arrived at by indirect means.
The discussion below represents a summary of points made ‘across the board’ by the older people taking part in the study. It begins with a brief discussion of factors antecedent to take up, and continues with a more extensive examination of how they saw their illness or disability within the context of their on-going daily lives. For many, this vision was contextualised within a life story that saw the present as an extension of the past, and as part of a future, too. ‘Life goes on’ they might say, and they had every intention of being part of it. The Help at Home service – or more precisely, their helper and their relationship with them - was seen as playing an important part of that continuity, some recognising that without it, they would be in danger of losing much of their independence. Fortunately, with it, they were often able to develop some effective coping strategies, and these are reflected in many of the comments discussed below.
Antecedents
Though chronic illness and a decline in abilities had preceded contact with the service in all cases, none of the participants had experienced this immediately before contacting Age Concern. Rather, decline had come about gradually, sometimes over many years, though it was often marked by a traumatic event at some point in the not too distant past. For one gentleman, this was the death of his wife, who had been ill for many years and for whom he had been the main carer. Another lady living in sheltered housing had been left isolated and deprived of her main source of domestic help and social contact when family members had moved abroad. For many, the initiative to seek help had come from themselves; while a few had recognised their needs and had dealt with it by approaching or accepting Age Concern’s help. Others had been persuaded, often somewhat reluctantly and usually by a family member or close friend, to take up help.
It should also be recognised that for many older people, their decision to approach the Help at Home service came about through consumer choice. Age Concern is not the only agency providing domestic support, particularly in the Shrewsbury area. Outstanding features attracting respondents in the first place included Age Concern’s good reputation, the friendly manner of staff, and the low cost of the service.
The first two comments represent to some degree the extremes of confidence expressed by participants. For some, asking for help was much like asking for any other service that, as a consumer, they might require. For others, it represented a more significant barrier.
This lady’s comment summarises those made by many. She was a self-confident person, quite used to ‘sorting things out’ for herself, though even she had been struggling on for some time at home without help. Her testimony supports the value of good local advertising and a good ‘point of contact’ service to the public, leading into a network of other services
“I was just looking for as much help as I could, and I’d seen the name Age Concern somewhere, they’d been doing more advertising, either in the doctor’s surgery or in the paper. Knowing me, I just phoned them up and said, can you tell me what help is available? And I was really very surprised, because I didn’t know they did this sort of thing. I was expecting it to come from the council… They have a solicitor once a week. And they gave me loads of information, selling a house, making a will, all that sort of thing. Which was great! So that’s how I came to them in the first place. I just wanted to find out what help was there.”
If the speaker above was used to sorting herself out, there were others who were less confident. This lady, who had significant health problems, just needed someone to make the first move for her:
Well, it was my daughter that did it. She got so angry with me, in as much as I couldn’t cope and I couldn’t find anybody to help. So she came along one day and said, I’ve been along to Age Concern and they’re going to send somebody up. And that was when the lady came. And it was such a relief because there’s very little I can do in the way of housework.
Illness & disability in context
Chronic illness and disability had, to one degree or another, become features in each person’s life. Many had been ‘struggling on’ for some time, some with remarkable fortitude. Illness or disability was always referred to as part of, but by no means the whole of, a more general life style. As disability had increased, so each individual had adapted their way of doing things to match their abilities, sometimes accepting limitations, but also finding new ways of achieving tasks or finding ones that suited them better. This lady, for example, described the accumulated burden of struggling to cope:
“I need (Help at Home) because I’m older, I can’t stand on my feet for too long. I need someone to do the shopping because the bags are too heavy. I’ve given up driving. I’ve given up taxis because they’re not very good at opening doors for you and getting you in the car. I’ve got osteoporosis. I get a lot of backache and neck ache. Its just age! I’m in my 82nd year. I just need more help with everything. Help with everyday events.”
Of course, older people need, as we all do, to fulfil practical everyday activities and routines. But a strong message that came through time and again was the desire to do things in their own preferred way. Though this could sometimes present a hazard, many participants preferred to take the risk rather than ‘let go’ standards. This gentleman, for example:
“You know, making the bed can be a big thing. To give you an idea of what I’m capable of, I can come back here and be gasping for breath. That’s how I am. What I ought to do is make half and have a rest and then go back and make the other half. But I can’t bring myself to do that. It just doesn’t seem right. I wouldn’t be able to sit still if I thought my bed wasn’t made until the afternoon.”
The need to maintain routines and standards that were of their choosing strongly influenced the attitudes many participants had to their illness or disability, and contributed to a particular sense of stoicism. People usually contextualised their health problems, accommodating them within a life story that emphasised continuity and adaptation:
“I have awful trouble with balance. I walk with a stick when I’m out. Yes, it’s a problem. When I’m sitting down or lying down, my blood pressure plummets. So I’m a bit wary about going out and about. I can’t go very far. But I used to walk a lot. So I try to keep in a little way, to keep going - touch wood!”
Many took a pragmatic approach to a complex set of inter-related problems, sensibly balancing the need to take precautions with an equally important imperative to maintain psychological as well as physical health:
“I get arthritis. Its age really… I had a stroke just after I got here, 6 years ago; a mini stroke. I’m on Warfarin tablets. I’ve not to touch anything sharp in case I cut myself. I’m bad on my legs, I can’t stoop or anything like that…People say I look well for my age. But it’s not always how you look - its how you feel. If I feel bad I keep telling myself, I’m all right, I get going; I take a small walk to the end of the road and back. That helps”
Time and again, participants emphasised the importance of a positive attitude to their well-being and their ability to cope.
I think it’s what you believe in really. If you believe in what you are doing, that it’s going to do you good, it will. If you don’t believe it, well, it won’t!”
“Well, you’ve got to get on with it. You’ve only got two chances. Like everyone says, it’s not a rehearsal. And there’s no such thing as a free lunch!”
“I think a lot of people have trouble with asking (for help). They don’t go looking for help when they could do with it. I know I can’t do without some help because I can’t get out anymore. That’s my thing.”
The value of the service
Far from being static, growing old and coping with frailty involved a continuous process of adaptation to change. As this lady’s account of dealing with repeat prescriptions shows, the ability to adapt to change is greatly enhanced by the presence of a reliable source of help:
“It’s such a difficult system with repeat prescriptions. You’ve got to take it to the surgery, put it into the box, and remember to tell them it’s to be collected by the chemist. Then you’ve got to tell the chemist it’s got to be picked up. And then you’ve got to go there to pick it up in 2 or 3 days time. It’s ridiculous for older people. They said, oh you can pop it in the post, but I can’t get to the post! So now I have a system with my helper, so that we work a week ahead. We go down the road, drop it in the box, and then the following week we go together to the chemist and pick it up. I’m working a week ahead all the time. Because I know she’s coming I make long lists out to make sure I don’t forget anything. You can’t just go out, you see, it depends what you feel like on that particular day.”
But for all participants, the aspect of the service they cherished most was the relationship they had with their helper. It was this, more than any other aspect of the service that they were keen to describe. The personality of the helper, and their willingness to adapt to needs, and to understand and anticipate what might be required on the day, were outstanding qualities that were widely shared
“She’s easy going, easy to get on with. I like that. She fits in and understands what is what. She’s got to know, to be intelligent enough to know what I want, what I want to do. Then she just gets on with it. She suggests things and she’s very sensible and intelligent.”
Some people said they felt reassured that Age Concern had taken the trouble to find someone they were compatible with:
“I do feel at least they’ve been vetted. Because if you advertise you’re never quite sure, you can’t find out until it’s too late.”
But for most, social interaction was an important part of the housework.
“We always sit down and we have a chat. She’s a friend really now. She’s quite young. She wants to know how I got on with this and that during the week and all that. She just says, do you want to come with me, and I’ll say, yes, or I don’t think I will. She’s wonderful. She goes to the library and she picks about six or seven books for me and comes back with them. And she says, I think I’ve got you some good ones this week. She chooses them. She’s picked some very good books. She knows my tastes now!”
“She’s been coming for some time now. And she’s wonderful, she does whatever I want. She cleans out cupboards. I’ve had strict instructions, do not stand on chairs! I lose my balance, you see. And it’s because I like talking that I needed a visitor, someone to take me out or have a chat, a sort of friend or companion really. And it has worked out both ways with her.”
“I find that when she comes on a Wednesday, she’s very thorough. She doesn’t come and think she owns the house. She says, what do you want, it’s up to you. And I say, oh some ironing, or the kitchen, or a bit of gardening. She picks up things for herself. And this is useful to me, very useful, because things won’t be left to go in a sad state. So I very much appreciate what she does. She comes in, she always says, what shall we do today, it’s up to you. Or she’ll say, we’ll leave the carpet this week, we’ll do some ironing. I just leave it to her. I don’t put any fast rules down. That’s not my nature. She comes in and has a cup tea and a bit of a chin-wag. I like somebody to talk to. That’s takes up half an hour!
Great importance was attached by some older people to the opportunity to reciprocate and to share common interests with their helper, or to be of help to them.
“I like cooking. When my wife was alive, I used to experiment, you know, make up dishes. It’s not the same when you’re on your own. And I can’t get about like I used to. But (my helper) brought me some bread and butter pudding that she’d made one day, and now we take it in turns. One week I make her a cake, and another week she brings something she’s made.”
“She’s bubbly, full of life. Do anything for you. But she’s not particularly happy. We talk sometimes. I like to think I’m her friend, now. It cuts both ways.”
“We sit down and have a chat. I know they’re not supposed to talk about themselves, but she’s a friend really now”
The meaning of independence
Independence always meant much more than the ability to do things without help – though this was usually how people described it at first.
“It’s going out on my own, doing things on my own. One of the worst things is not being able to go out when I want to go out. I could if I felt a bit more secure on my own...I’m a private person, I’d hate to have anyone help me to wash or dress. Being a private person is to do with independence, isn’t it?”
Particularly for those who suffered problems of mobility, their ‘world’ had shrunk, sometimes to little more than the four walls of the house. For these, the quality of the home environment and the need to maintain things to their own standards were important. This gentleman for example, who could not go out except in a wheelchair, described the importance of routine and security
As long as I can put myself to, go to the dining room; cook my food and all that. I don't stay downstairs. After tidying myself I come down, and I go back at night. I don't go up and down the stairs. Mainly once or twice a day. I get up and get dressed, tidy my bed, come down. I have my medication, one lot upstairs, one lot down, so I don't have to go up and down. I like to watch TV, and to read the newspaper. That’s all I want. Simple needs! (My helper), she keeps me going. It works out well at the moment.
Most people, when pressed, acknowledged that independence also had a great deal to do with relationships with others and with accepting help when needed.
In a word, it means being able to manage on your own. It’s as simple as that. Although I’ll put one proviso, having thought about it for ten seconds: I was always dependent on my wife. She did everything. I couldn’t boil an egg! So, having gone through life, fifty years of marriage, having that attendance, I can’t honestly say I’m independent, can I? And now I’ve had to have Age Concern. I was never in a position where I had to cry out for them. But, no, I’m not as independent as I try to make out.”
Relationships with family were clearly an important part of participants lives. Some clearly played active and important roles, and while they depended on help from offspring, they were also relied upon in turn to provide support and guidance. For many, this affected their drive to remain independent, as this lady describes:
What does independence mean for me? Well, for one thing, it’s being able to cope on your own. I know I’ve got a daughter round the corner. But my son, who was born totally deaf, his wife is deaf too, and is also going blind. So I’ve got a lot of worrying to do for them! There’s no time to worry for me, I’ve got to sort them out a lot! I talk to them every day. I have to cope, for their sake!
This lady gave daily counselling to her son, who lived abroad
He’s lovely. But he’s an alcoholic. And I have him quite tearful on the phone at times. I have no worries or cares, except for him. At the moment he’s trying to be a good boy. But it doesn’t last long. His children don’t want anything to do with him. He’s had 2 marriages; I’ve had to go through all that with him. He’s the bane of my life. When he’s happy I can be happy. But when he’s miserable I get the phone calls.
Remaining independent, for some people, involved a complex process of reconciliation between conflicting aims: the desire for contact with others, and the wish ‘not to be a burden’ within a context of declining abilities and increasing needs. The twin threats of dependency on family and on residential care loomed large in the minds of some participants. This lady expressed a sense of stoicism that many of the older people felt at gradually losing their independence.
“It’s the company I miss. But I don’t want to give up, I want to keep going, which I think is better for me. If I sit here and just give in, I might as well go into a home and be done with it. As long as I can keep myself clean, and have someone to come in and keep my home clean. All I need is to be able to walk, and go out, and to go round the shops. Not to have to worry people to come in. that’s what I really want, but I’ll never have it now. I’m eighty-four this year, so I can’t expect it. I hate to worry people. My family, they’re young, they want to be getting on with their own life. They don’t want to be lumbered with me. They tell me not to worry, but I know they must at times get a little bit fed up. It’s only human nature.”
The Help at Home service contributed an important sense of security and independence to carers too. This lady spoke of her father, for whom she was the main carer
“As you can see, Dad is practically immobile. He wants all his own things, his independence. But he is really dependent…And once he has come down stairs he can’t do a great deal. Too much movement and he’s very unstable. So, I work full time, I have a family, and I felt that we both of us would benefit if he had help - because it is hard work running two houses on your own. So, it helps me psychologically, too, because it gives me a real boost to see something has just been Hoovered. It’s very nice. It’s just that tip of the iceberg that enables you to cope really. And that goes for both of us. Dad really looks forward to her coming. That’s important.”
The future For some, the future seemed at best uncertain, at worst a sure process of decline. Many reserved their strongest expressions for their fear of residential care, which they all imagined as a loss of everything that was valuable to them, including purpose and identity. The following comments are typical:
“What I dread, is having to go in a home. I’d rather die than go in a home. I like my freedom.”
“I’d do anything rather than go in a residential home. So any help I can get. People go downhill so quickly once they give up their homes. You know, you’d have to get rid of all your bits and pieces, which you’ve spent years getting, my husband and I together. I can’t bear being restricted. If I want to get up, however long it might take me to get into the kitchen, make a cup of tea any time day or night, I can do it. I know people who have had to go into a residential home through ill health. They went down hill like that, as soon as they were out of their own place. I mean I know a lot of people have to go, but I shall struggle on!
“If old people can get any help to keep them in their own home, they’re going to be far better off. There’s no getting away, when I have been to visit people in residential homes, they’re just sitting around. I know one chap; he’s the only man in twelve women. He stays in his little room. You see you’ve got your memories in your own home. At my age, that’s all you’ve got, you don’t want to lose it!”
“You hear some people say, they’re going to go into a residential home, and then all their worries will be gone. But sometimes it’s the worries and concerns and the responsibilities that keep you going.”
“I was checking my bank statement the other day, and I thought, well at least I am doing this. I know what has come in, gone out, what’s left. It keeps you going. I thought, well, if everything was lifted off you, what would you think about? When you’ve got grandchildren, great-grandchildren in my case, well, oh dear, there’s always plenty going on. No, until I get Alzheimer’s, or whatever, I’m better of where I am.”
“There’s one of them homes at the bottom of the lane. It’s a very nice place by all accounts. Very nice. But the mere thought of being there would be enough.”
The last word should perhaps go to this lady, who summed up the value of Help at Home succinctly, putting it in the context of her past, present and future needs:
“I was finding it difficult finding things for (my helper) to do, because, there’s only me here in the house. When the family were here, the house was always full, but now it isn’t. So really there’s very little to do now, except for hoovering, washing the kitchen floor, little jobs, cleaning the bath. They’re little things, I know, but I can’t do them any more. So it has been a great help. I don’t think I could manage here on my own really without it. I don’t want to go in a residential home if humanly possible!”
Conclusion
The testimonies of older people taking part in this study reinforce the importance of domiciliary services that are more than merely functional. The need to be part of on-going relationships, and to contribute to the welfare of others around them, as well as to receive security and support when needed, are all important aspects of daily life that give meaning and value. The Help at Home service provides useful practical support in the form of housework and other domestic tasks, but also valuable social contact. Though some participants were more aware of it than others, the fact that it can link in to other forms of help also provides an important safety net, helping older people to remain visible. Without such help, many service users would be more vulnerable to crisis, and thus in need of more intensive forms of intervention.
Market forces operate in the provision of domestic care services as elsewhere. Age Concern has a prominent position in the field due to its local presence, and its ability to liaise with other services both within the Federation and beyond. It has the resources to be sensitive to the sort of detail that matter to older people: to be aware of the importance of personality in the caring role, thus working to support positive relationships between staff, volunteers and service users. It is also able to take the responsibility for ensuring the security of its staff and volunteers as well as the older people who use its services. For in the end, older people using a service do not see it as a ‘Service’ as such, in the sense of an institution with rules and duties and obligations to the general public. They see it in terms of two particular interests: their need for help that delivers what they want in a reliable manner; and the relationship they have with the person standing before them, whom they need to trust and feel they have something in common with.
This short study has helped to illuminate the concerns of some of the older people using the service. It has reinforced the point that independence is more than a matter of performing certain tasks, important, or even vital, though they may be. Older people are consumers of services, as are others in society. They buy into things that matter to them. Not the least of these is independence. Though it is ultimately impossible to quantify in every respect, the participants in this study have shown that the support provided by the Help at Home service, particularity as it is represented in the quality of staffs employed by Age Concern, but also in the confidence that many people have in it as a trustworthy organisation, is an important part of their lives that delivers real value.
References
Audit Commission (1997) The Coming of Age – Improving care services for older people. London, Audit Commission
Cattan, M (2002) Supporting Older People to Overcome Social Isolation and Loneliness, London, Help the Aged.
Clark, H., Dyer, S., Horwood, J., (1998), That Bit of Help, Bristol, The Policy Press.
Department of Health (1998) Modernising Social Services, London, HMSO
Department of Health, (2000) The NHS Plan: A plan for investment, a plan for reform, London, HMSO
Department of Health (2001), Intermediate Care (HSC 2001/001: LAC ((2001)1), London, Department of Health.
Department of Health (2001) National Service Framework for Older People, London, Department of Health.
Langan, J., Means, R., Rolfe, S., (1996) Maintaining Independence in Later Life: Older People Speaking; Kidlington, Oxon, Anchor Trust
Le Mesurier, N (2002) A Human Touch: An Evaluation of the Concern for Older People in Ealing (COPE) Project. Birmingham, University of Birmingham
Le Mesurier, N, (2003a) “So much more than just walking!” an evaluation of a pilot programme of social rehabilitation projects provided by Age Concerns in five locations in England, London, Age Concern England.
Le Mesurier, N, (2003b) The Hidden Store: Older People’s Contributions to Rural Communities., London, Age Concern England
Letwin, H., (2001) Social network type and morale in old age, The Gerontologist, 41: 516 – 524
Sidell, M (1995) Health in Old Age, Buckingham, Open University Press.
Wenger, G.Clare, (1994b); Support Networks of Older People: a guide for practitioners; Centre for Social Policy Research & Development, University of Wales, Bangor; Gwennedd
This report, written in December 2003 and reproduced here with permission, describes the results of a qualitative evaluation of the Help at Home Service provided by Age Concern Shropshire, Telford and the Wrekin. While the pretext for the research was an eveluation of the service, much of the interest lies in what the older people who used the service had to say about their lives and particularly about what independence meant to them as they grew old.
The Help at Home service, which continues to operate, provided help to older people who wished to live independently at home, but who require support with one or more practical tasks. The service aims to support the whole person in the environment in which they live, and thus to maintain social contact as far as possible in order to prevent social isolation, as well as to provide practical assistance with daily living tasks.
Tasks can be divided into four, often overlapping, groups:
· Domestic (including shopping, laundry, ironing, bed changing and making, mopping floors, changing curtains, and fridge / freezer care. different tasks are completed each week, depending on need).
· Gardening
· DIY and home safety tasks
· Visiting and befriending
A a comprehensive assessment of needs, which if needed can be referred on to other agencies or to other sources of help within Age Concern. As each of the older people in this study testified, access to social contact and to information are often as important as the more practical aspects of the service.
Contact is made weekly, fortnightly or in a few cases monthly. Most contacts last one hour at a time, which is enough to allow time for contact and communication to be more than just functional.
To be eligible for Help at Home, older people must:
- Live in Shropshire (excluding Telford and Wrekin) and be aged 65 or over.
- Have major difficulty in safely or adequately carrying out one or more key daily living tasks
- Be in a situation where carrying out daily living tasks would lead to a likelihood of physical harm or injury
- Be unable to carry out tasks without experiencing significant pain or discomfort or fatigue
The service started in October 2001 with an initial contract awarded by Shropshire County Council for three years. At the time of writing (December 2003) it employs 10 administration, management and assessment staff, and about one hundred home support workers, most of whom are part-time. In addition some 60 volunteers are involved. The service currently has over 450 service users across the whole county.
Background
There is an increasing awareness of the role of the voluntary sector in providing low-level preventative services for older people. This is identified, for example, in the Intermediate Care Guidance issued by the Department of Health (HSC 2001/001: LAC ((2001)1) (DoH January 2001), which urges that the NHS and councils should work closely with agencies in the voluntary sector to seek alliances that complement and extend the roles beyond the statutory sector. The theme within this and other key documents (for example, the Social Services White Paper (DoH 1998), the NHS Plan (DoH 2000) and the National Service Framework for older people (DoH 2001)) is the promotion of independence as a key goal of services. The drive is to generally reduce ‘dependency’ on services which, through processes such as the ‘vicious circle’ identified by the Audit Commission (1997), either fail to provide timely and appropriate intervention and review, or encourage long-term usage of services. Such a process is seen to effectively de-skill older people and make them more, not less, vulnerable to crises, and to incur expensive and ‘unnecessary’ interventions in their wake.
In recent years there has been an increasing focus within policy on the social and emotional factors influencing health. The green paper, Our Healthier Nation, for example, demonstrated recognition of the fact that being ‘well’ involves making “the most of the opportunities that life has to offer and (playing) a full part in community and working life”. Indeed, it states that the condition of healthiness itself includes, “being confident and positive and able to cope with the ups and downs of life” (DoH, 1998).
Being an active citizen, more than a recipient of services, is an important part of being healthy. For those who need them, services such as home visiting, befriending, or day services and lunch clubs are widely recognised as effective, to one degree or another, in replacing or contributing to essential networks of family or friends. As such, they help older people to overcome problems of low morale and confidence, and to seek practical solutions to problems of isolation and difficulty of access. They can help older people to link in with networks that have been lost or to create new ones. Practical activities, too, such as housework, shopping or walking – while they may not in themselves provide direct links to social networks – nevertheless provide opportunities to enhance self-esteem through feelings of independence and dignity. Such opportunities have the potential to mitigate or eliminate the effects of stress associated with social isolation and loneliness, and thus to improve health in some cases.
Age Concern has traditionally worked to promote the greater involvement of older people in society, both at an individual and a collective level. They do this by a number of means, including information and advice services, and ‘capacity building’ initiatives, as well as through direct care services. A number of reports have been produced that review the effectiveness of Age Concern services in promoting independence (e.g. Le Mesurier, 2002, 2003a, 2003b). These contribute to a growing body of literature that suggests the strength of an older person’s social and support networks is directly related to their ability to cope with increasing frailty. A study in Israel, for example, explored the relationship between social network type and morale in over 2000 older people (Letwin, 2001). Those older people with broad networks that included a wide range of friends as well as family reported higher levels of morale than those with exclusive family or restricted networks. Certain network types were found to be second only to disability in predicting morale, a finding which further reinforces the value placed by many older people on friendships and relationships of their choice in addition to those with their families (Langan, et al, 1996).
Shifts in network type, from independent towards more dependent network types, are found to typically increase with age due to the influence of increasing frailty, physical or mental impairment. The strength of social contact with close family members, friends and neighbours, and also with community groups, has been shown to have a positive influence on the extent to which older people are able to remain independent and active (Wenger, 1994.)
However, there is evidence that some services fall short of recognising the value of independence for many older people. Independence can be defined in many ways; positively as the opportunity “to make…choices about what constitutes an acceptable quality of life”; alternatively as avoiding being a ‘burden’ on others (Cattan, 2002.). It is not about ‘doing things alone’ or without help, but about having a sense of control over one’s life.
This theme is echoed in Clark et al’s (1998) seminal report: That Bit of Help: the high value of low level preventative services. This stresses the importance placed by older people on maintaining their own independence at home. The two terms have powerful overlapping meanings. Home is seen as a place where it is possible to exercise choice and control over what, when and with whom individuals conduct activities that are meaningful to them. It is often regarded as “the final boundary of independence.” For older women in particular, ‘keeping the house up’ and maintaining personal standards of cleanliness and tidiness are important constituents of identity and public persona. The report argues that such ‘trivial’ matters as having clean net curtains and of doing one’s own shopping are issues of self-respect; yet care agencies inadvertently marginalise such matters by administering only to the most immediate of needs. They provide care, which is associated with a loss of independence, when what is often wanted is help, which maintains independence.
The desire to maintain independence manifests in the things older people say they want from services (Cattan, op cit.). Her interviews with users of services for groups of older people identified a common desire to be more involved in their planning and delivery, and a wish for meaningful and purposeful activities. Involvement did not have to be large: feelings of control could be enhanced for some people simply by the opportunity to suggest alternatives. At the very least they wanted to feel a resource, and to contribute. Few services, however, consistently involved older people, and most referred to them opportunistically.
Many older people find it difficult to ask for help, particularly if they find such requests demeaning or they are not fully conversant with the complex systems and procedures operated by local services. In order to reach older people who are vulnerable before crisis makes expensive and often traumatic intervention inevitable, services need to take a pro-active approach and to invest in ‘low level’ services that provide the kind of help that older people want to keep them active and involved. Many health and local authorities fail to do this, constrained as they are by budgetary and procedural restrictions that focus care provision only on the most ‘needy’. It is therefore essential that service provision be seen as a process of inter-related services, not as discreet, ‘protected’ functions. The voluntary sector has an important role to play in providing ‘first contact’ and low-level support services for older people that are often beyond the scope of the statutory authorities.
Old age is a time of changing identity. The boundaries of independence change as circumstances and capacities are affected. Social isolation may increase as friends and partners die and this can be detrimental to life satisfaction and, relatedly, to mental health (Sidell, 1995). Such changes can leave some people feeling very vulnerable. Companionship, the daily patterns of routine interaction, the sense of security in having someone else around, someone to share pleasures with as well as concerns, these are often lost when family, friends and partners die. No amount of alarms and other security devices (though these are valuable and often essential) can replace the ‘human touch’ in providing a sense of security.
At the same time it is important for older people to know that it is possible to get help when it is needed, from a source that is familiar and accessible. Likewise, the opportunity to discuss a problem or confide in someone who is familiar yet independent of family members, whom many older people are reluctant to ‘burden’ with their worries, is valuable.
Clark et al (op cit.) express it succinctly. “Knowing that help is available before a crisis point is reached and having ready access to that help can make all the difference. ‘Knowing’ depends on having access and information, and this can be a problem for older people outside the network of, for example, luncheon clubs and community centres.
Help at Home shares many of the characteristics of other services provided by Age Concern, not least in its emphasis on the involvement of older people as partners in their own care. As the evidence from this qualitative study shows, the social interaction received alongside the practical assistance is something that service users value highly. This is not just a matter of a ‘bit of chat’ on the side while the worker gets on with the ‘real’ work of domestic chores. It reflects a sense of security and of involvement that may have a direct relevance to physical and mental health, with possible consequences for service costs as well.
The aim of this report
The commission for this report came with a clear brief to avoid duplication of existing audit data. Rather, the desire was to understand more of the nature, meaning and value of the service for a small sample of service users, what led them to it, and what influence it had on their sense of independence.
The methodology chosen was a series of in-depth interviews with ten older people who were current users of the service. The commissioners identified a series of questions:
· What led to your decision to seek help?
· Why did you approach Age Concern?
· What do you think about the service?
· What difference has the service made?
· Have you recently been to a doctor or hospital?
· What other services have you used in the last 12 months?
· How independent are you?
· Are there things that could happen that would make you more independent?”
In order to allow participants to speak freely about their lives and the role of the service within it, an interview schedule was constructed that grouped these questions into five broad areas of interest:
· Factors precipitating take up
· Experience of accessing the service, and of accessing and negotiating other services
· The value of the service to them in the context of their daily lives, and of their identity as (older) people
· The impact of the service on the need for other services.
· The meaning of independence for respondents.
Interviews were conducted in the respondent’s own home, at a time convenient to them.
Participants in the study
In the first instance, a sample frame was identified consisting of a cohort of clients who had indicated at the time of initial assessment they would be willing to be contacted for monitoring purposes, and had received an initial assessment during September or October 2002. This identified thirty-one older people.
From this, a purposive sample was taken of ten service users, the size of the sample having been determined by the commissioners. Selection criteria included location, gender, age and range of tasks provided as part of the service. As the majority of service users at the time lived in the Shrewsbury or Ludlow & Church Stretton areas, an equal number of service users were identified from these locations. These individuals were then approached at first by the service manager and then, if they agreed, by myself by letter and telephone to arrange an appointment. Confidentiality was assured at all times, both verbally and in writing, as was the right to withdraw without penalty, and all participants were offered a copy of their interview either in audio tape or transcript if they wished.
The ten older people recruited to the study varied considerably in their needs and circumstances, though the majority were aged over 80 and each lived alone.
Themes from the interviews
Rather than ask a series of direct questions requiring closed responses, the interviews presented a series of open questions to encourage discussion. Each opened with an enquiry about how the respondent had come to contact Age Concern in the first place, and proceeded from there to cover the key topics: their experience and views of the service, what made it valuable for them, their experience of other services, and what for them constituted independence.
It quickly became clear that direct questions requiring comparison between the Help at Home and other services did not elicit a clear response, and that many participants had either little in or experience of other services. From their point of view, they, or others close to them, had made an informed choice to approach Age Concern in the first place, and they valued the service not by comparison with other services, but in terms of what it did for them ‘here and now’. Participants therefore found it easier to talk about the service and how it fitted in with their lives, including the constraints they were under and the opportunities they enjoyed.
One factor that shone through almost all the interviews was that, for these older people, the service was rarely seen in functional terms only, but was valued as much for the social contact it offered, which had psychological benefits and created a sense of enhanced confidence and ‘belonging’, as it did for the practical benefits it offered. Their outlook incorporated a dynamic interplay of physical, mental, social and spiritual conditions. Problems were rarely discussed in isolation, and solutions were often arrived at by indirect means.
The discussion below represents a summary of points made ‘across the board’ by the older people taking part in the study. It begins with a brief discussion of factors antecedent to take up, and continues with a more extensive examination of how they saw their illness or disability within the context of their on-going daily lives. For many, this vision was contextualised within a life story that saw the present as an extension of the past, and as part of a future, too. ‘Life goes on’ they might say, and they had every intention of being part of it. The Help at Home service – or more precisely, their helper and their relationship with them - was seen as playing an important part of that continuity, some recognising that without it, they would be in danger of losing much of their independence. Fortunately, with it, they were often able to develop some effective coping strategies, and these are reflected in many of the comments discussed below.
Antecedents
Though chronic illness and a decline in abilities had preceded contact with the service in all cases, none of the participants had experienced this immediately before contacting Age Concern. Rather, decline had come about gradually, sometimes over many years, though it was often marked by a traumatic event at some point in the not too distant past. For one gentleman, this was the death of his wife, who had been ill for many years and for whom he had been the main carer. Another lady living in sheltered housing had been left isolated and deprived of her main source of domestic help and social contact when family members had moved abroad. For many, the initiative to seek help had come from themselves; while a few had recognised their needs and had dealt with it by approaching or accepting Age Concern’s help. Others had been persuaded, often somewhat reluctantly and usually by a family member or close friend, to take up help.
It should also be recognised that for many older people, their decision to approach the Help at Home service came about through consumer choice. Age Concern is not the only agency providing domestic support, particularly in the Shrewsbury area. Outstanding features attracting respondents in the first place included Age Concern’s good reputation, the friendly manner of staff, and the low cost of the service.
The first two comments represent to some degree the extremes of confidence expressed by participants. For some, asking for help was much like asking for any other service that, as a consumer, they might require. For others, it represented a more significant barrier.
This lady’s comment summarises those made by many. She was a self-confident person, quite used to ‘sorting things out’ for herself, though even she had been struggling on for some time at home without help. Her testimony supports the value of good local advertising and a good ‘point of contact’ service to the public, leading into a network of other services
“I was just looking for as much help as I could, and I’d seen the name Age Concern somewhere, they’d been doing more advertising, either in the doctor’s surgery or in the paper. Knowing me, I just phoned them up and said, can you tell me what help is available? And I was really very surprised, because I didn’t know they did this sort of thing. I was expecting it to come from the council… They have a solicitor once a week. And they gave me loads of information, selling a house, making a will, all that sort of thing. Which was great! So that’s how I came to them in the first place. I just wanted to find out what help was there.”
If the speaker above was used to sorting herself out, there were others who were less confident. This lady, who had significant health problems, just needed someone to make the first move for her:
Well, it was my daughter that did it. She got so angry with me, in as much as I couldn’t cope and I couldn’t find anybody to help. So she came along one day and said, I’ve been along to Age Concern and they’re going to send somebody up. And that was when the lady came. And it was such a relief because there’s very little I can do in the way of housework.
Illness & disability in context
Chronic illness and disability had, to one degree or another, become features in each person’s life. Many had been ‘struggling on’ for some time, some with remarkable fortitude. Illness or disability was always referred to as part of, but by no means the whole of, a more general life style. As disability had increased, so each individual had adapted their way of doing things to match their abilities, sometimes accepting limitations, but also finding new ways of achieving tasks or finding ones that suited them better. This lady, for example, described the accumulated burden of struggling to cope:
“I need (Help at Home) because I’m older, I can’t stand on my feet for too long. I need someone to do the shopping because the bags are too heavy. I’ve given up driving. I’ve given up taxis because they’re not very good at opening doors for you and getting you in the car. I’ve got osteoporosis. I get a lot of backache and neck ache. Its just age! I’m in my 82nd year. I just need more help with everything. Help with everyday events.”
Of course, older people need, as we all do, to fulfil practical everyday activities and routines. But a strong message that came through time and again was the desire to do things in their own preferred way. Though this could sometimes present a hazard, many participants preferred to take the risk rather than ‘let go’ standards. This gentleman, for example:
“You know, making the bed can be a big thing. To give you an idea of what I’m capable of, I can come back here and be gasping for breath. That’s how I am. What I ought to do is make half and have a rest and then go back and make the other half. But I can’t bring myself to do that. It just doesn’t seem right. I wouldn’t be able to sit still if I thought my bed wasn’t made until the afternoon.”
The need to maintain routines and standards that were of their choosing strongly influenced the attitudes many participants had to their illness or disability, and contributed to a particular sense of stoicism. People usually contextualised their health problems, accommodating them within a life story that emphasised continuity and adaptation:
“I have awful trouble with balance. I walk with a stick when I’m out. Yes, it’s a problem. When I’m sitting down or lying down, my blood pressure plummets. So I’m a bit wary about going out and about. I can’t go very far. But I used to walk a lot. So I try to keep in a little way, to keep going - touch wood!”
Many took a pragmatic approach to a complex set of inter-related problems, sensibly balancing the need to take precautions with an equally important imperative to maintain psychological as well as physical health:
“I get arthritis. Its age really… I had a stroke just after I got here, 6 years ago; a mini stroke. I’m on Warfarin tablets. I’ve not to touch anything sharp in case I cut myself. I’m bad on my legs, I can’t stoop or anything like that…People say I look well for my age. But it’s not always how you look - its how you feel. If I feel bad I keep telling myself, I’m all right, I get going; I take a small walk to the end of the road and back. That helps”
Time and again, participants emphasised the importance of a positive attitude to their well-being and their ability to cope.
I think it’s what you believe in really. If you believe in what you are doing, that it’s going to do you good, it will. If you don’t believe it, well, it won’t!”
“Well, you’ve got to get on with it. You’ve only got two chances. Like everyone says, it’s not a rehearsal. And there’s no such thing as a free lunch!”
“I think a lot of people have trouble with asking (for help). They don’t go looking for help when they could do with it. I know I can’t do without some help because I can’t get out anymore. That’s my thing.”
The value of the service
Far from being static, growing old and coping with frailty involved a continuous process of adaptation to change. As this lady’s account of dealing with repeat prescriptions shows, the ability to adapt to change is greatly enhanced by the presence of a reliable source of help:
“It’s such a difficult system with repeat prescriptions. You’ve got to take it to the surgery, put it into the box, and remember to tell them it’s to be collected by the chemist. Then you’ve got to tell the chemist it’s got to be picked up. And then you’ve got to go there to pick it up in 2 or 3 days time. It’s ridiculous for older people. They said, oh you can pop it in the post, but I can’t get to the post! So now I have a system with my helper, so that we work a week ahead. We go down the road, drop it in the box, and then the following week we go together to the chemist and pick it up. I’m working a week ahead all the time. Because I know she’s coming I make long lists out to make sure I don’t forget anything. You can’t just go out, you see, it depends what you feel like on that particular day.”
But for all participants, the aspect of the service they cherished most was the relationship they had with their helper. It was this, more than any other aspect of the service that they were keen to describe. The personality of the helper, and their willingness to adapt to needs, and to understand and anticipate what might be required on the day, were outstanding qualities that were widely shared
“She’s easy going, easy to get on with. I like that. She fits in and understands what is what. She’s got to know, to be intelligent enough to know what I want, what I want to do. Then she just gets on with it. She suggests things and she’s very sensible and intelligent.”
Some people said they felt reassured that Age Concern had taken the trouble to find someone they were compatible with:
“I do feel at least they’ve been vetted. Because if you advertise you’re never quite sure, you can’t find out until it’s too late.”
But for most, social interaction was an important part of the housework.
“We always sit down and we have a chat. She’s a friend really now. She’s quite young. She wants to know how I got on with this and that during the week and all that. She just says, do you want to come with me, and I’ll say, yes, or I don’t think I will. She’s wonderful. She goes to the library and she picks about six or seven books for me and comes back with them. And she says, I think I’ve got you some good ones this week. She chooses them. She’s picked some very good books. She knows my tastes now!”
“She’s been coming for some time now. And she’s wonderful, she does whatever I want. She cleans out cupboards. I’ve had strict instructions, do not stand on chairs! I lose my balance, you see. And it’s because I like talking that I needed a visitor, someone to take me out or have a chat, a sort of friend or companion really. And it has worked out both ways with her.”
“I find that when she comes on a Wednesday, she’s very thorough. She doesn’t come and think she owns the house. She says, what do you want, it’s up to you. And I say, oh some ironing, or the kitchen, or a bit of gardening. She picks up things for herself. And this is useful to me, very useful, because things won’t be left to go in a sad state. So I very much appreciate what she does. She comes in, she always says, what shall we do today, it’s up to you. Or she’ll say, we’ll leave the carpet this week, we’ll do some ironing. I just leave it to her. I don’t put any fast rules down. That’s not my nature. She comes in and has a cup tea and a bit of a chin-wag. I like somebody to talk to. That’s takes up half an hour!
Great importance was attached by some older people to the opportunity to reciprocate and to share common interests with their helper, or to be of help to them.
“I like cooking. When my wife was alive, I used to experiment, you know, make up dishes. It’s not the same when you’re on your own. And I can’t get about like I used to. But (my helper) brought me some bread and butter pudding that she’d made one day, and now we take it in turns. One week I make her a cake, and another week she brings something she’s made.”
“She’s bubbly, full of life. Do anything for you. But she’s not particularly happy. We talk sometimes. I like to think I’m her friend, now. It cuts both ways.”
“We sit down and have a chat. I know they’re not supposed to talk about themselves, but she’s a friend really now”
The meaning of independence
Independence always meant much more than the ability to do things without help – though this was usually how people described it at first.
“It’s going out on my own, doing things on my own. One of the worst things is not being able to go out when I want to go out. I could if I felt a bit more secure on my own...I’m a private person, I’d hate to have anyone help me to wash or dress. Being a private person is to do with independence, isn’t it?”
Particularly for those who suffered problems of mobility, their ‘world’ had shrunk, sometimes to little more than the four walls of the house. For these, the quality of the home environment and the need to maintain things to their own standards were important. This gentleman for example, who could not go out except in a wheelchair, described the importance of routine and security
As long as I can put myself to, go to the dining room; cook my food and all that. I don't stay downstairs. After tidying myself I come down, and I go back at night. I don't go up and down the stairs. Mainly once or twice a day. I get up and get dressed, tidy my bed, come down. I have my medication, one lot upstairs, one lot down, so I don't have to go up and down. I like to watch TV, and to read the newspaper. That’s all I want. Simple needs! (My helper), she keeps me going. It works out well at the moment.
Most people, when pressed, acknowledged that independence also had a great deal to do with relationships with others and with accepting help when needed.
In a word, it means being able to manage on your own. It’s as simple as that. Although I’ll put one proviso, having thought about it for ten seconds: I was always dependent on my wife. She did everything. I couldn’t boil an egg! So, having gone through life, fifty years of marriage, having that attendance, I can’t honestly say I’m independent, can I? And now I’ve had to have Age Concern. I was never in a position where I had to cry out for them. But, no, I’m not as independent as I try to make out.”
Relationships with family were clearly an important part of participants lives. Some clearly played active and important roles, and while they depended on help from offspring, they were also relied upon in turn to provide support and guidance. For many, this affected their drive to remain independent, as this lady describes:
What does independence mean for me? Well, for one thing, it’s being able to cope on your own. I know I’ve got a daughter round the corner. But my son, who was born totally deaf, his wife is deaf too, and is also going blind. So I’ve got a lot of worrying to do for them! There’s no time to worry for me, I’ve got to sort them out a lot! I talk to them every day. I have to cope, for their sake!
This lady gave daily counselling to her son, who lived abroad
He’s lovely. But he’s an alcoholic. And I have him quite tearful on the phone at times. I have no worries or cares, except for him. At the moment he’s trying to be a good boy. But it doesn’t last long. His children don’t want anything to do with him. He’s had 2 marriages; I’ve had to go through all that with him. He’s the bane of my life. When he’s happy I can be happy. But when he’s miserable I get the phone calls.
Remaining independent, for some people, involved a complex process of reconciliation between conflicting aims: the desire for contact with others, and the wish ‘not to be a burden’ within a context of declining abilities and increasing needs. The twin threats of dependency on family and on residential care loomed large in the minds of some participants. This lady expressed a sense of stoicism that many of the older people felt at gradually losing their independence.
“It’s the company I miss. But I don’t want to give up, I want to keep going, which I think is better for me. If I sit here and just give in, I might as well go into a home and be done with it. As long as I can keep myself clean, and have someone to come in and keep my home clean. All I need is to be able to walk, and go out, and to go round the shops. Not to have to worry people to come in. that’s what I really want, but I’ll never have it now. I’m eighty-four this year, so I can’t expect it. I hate to worry people. My family, they’re young, they want to be getting on with their own life. They don’t want to be lumbered with me. They tell me not to worry, but I know they must at times get a little bit fed up. It’s only human nature.”
The Help at Home service contributed an important sense of security and independence to carers too. This lady spoke of her father, for whom she was the main carer
“As you can see, Dad is practically immobile. He wants all his own things, his independence. But he is really dependent…And once he has come down stairs he can’t do a great deal. Too much movement and he’s very unstable. So, I work full time, I have a family, and I felt that we both of us would benefit if he had help - because it is hard work running two houses on your own. So, it helps me psychologically, too, because it gives me a real boost to see something has just been Hoovered. It’s very nice. It’s just that tip of the iceberg that enables you to cope really. And that goes for both of us. Dad really looks forward to her coming. That’s important.”
The future For some, the future seemed at best uncertain, at worst a sure process of decline. Many reserved their strongest expressions for their fear of residential care, which they all imagined as a loss of everything that was valuable to them, including purpose and identity. The following comments are typical:
“What I dread, is having to go in a home. I’d rather die than go in a home. I like my freedom.”
“I’d do anything rather than go in a residential home. So any help I can get. People go downhill so quickly once they give up their homes. You know, you’d have to get rid of all your bits and pieces, which you’ve spent years getting, my husband and I together. I can’t bear being restricted. If I want to get up, however long it might take me to get into the kitchen, make a cup of tea any time day or night, I can do it. I know people who have had to go into a residential home through ill health. They went down hill like that, as soon as they were out of their own place. I mean I know a lot of people have to go, but I shall struggle on!
“If old people can get any help to keep them in their own home, they’re going to be far better off. There’s no getting away, when I have been to visit people in residential homes, they’re just sitting around. I know one chap; he’s the only man in twelve women. He stays in his little room. You see you’ve got your memories in your own home. At my age, that’s all you’ve got, you don’t want to lose it!”
“You hear some people say, they’re going to go into a residential home, and then all their worries will be gone. But sometimes it’s the worries and concerns and the responsibilities that keep you going.”
“I was checking my bank statement the other day, and I thought, well at least I am doing this. I know what has come in, gone out, what’s left. It keeps you going. I thought, well, if everything was lifted off you, what would you think about? When you’ve got grandchildren, great-grandchildren in my case, well, oh dear, there’s always plenty going on. No, until I get Alzheimer’s, or whatever, I’m better of where I am.”
“There’s one of them homes at the bottom of the lane. It’s a very nice place by all accounts. Very nice. But the mere thought of being there would be enough.”
The last word should perhaps go to this lady, who summed up the value of Help at Home succinctly, putting it in the context of her past, present and future needs:
“I was finding it difficult finding things for (my helper) to do, because, there’s only me here in the house. When the family were here, the house was always full, but now it isn’t. So really there’s very little to do now, except for hoovering, washing the kitchen floor, little jobs, cleaning the bath. They’re little things, I know, but I can’t do them any more. So it has been a great help. I don’t think I could manage here on my own really without it. I don’t want to go in a residential home if humanly possible!”
Conclusion
The testimonies of older people taking part in this study reinforce the importance of domiciliary services that are more than merely functional. The need to be part of on-going relationships, and to contribute to the welfare of others around them, as well as to receive security and support when needed, are all important aspects of daily life that give meaning and value. The Help at Home service provides useful practical support in the form of housework and other domestic tasks, but also valuable social contact. Though some participants were more aware of it than others, the fact that it can link in to other forms of help also provides an important safety net, helping older people to remain visible. Without such help, many service users would be more vulnerable to crisis, and thus in need of more intensive forms of intervention.
Market forces operate in the provision of domestic care services as elsewhere. Age Concern has a prominent position in the field due to its local presence, and its ability to liaise with other services both within the Federation and beyond. It has the resources to be sensitive to the sort of detail that matter to older people: to be aware of the importance of personality in the caring role, thus working to support positive relationships between staff, volunteers and service users. It is also able to take the responsibility for ensuring the security of its staff and volunteers as well as the older people who use its services. For in the end, older people using a service do not see it as a ‘Service’ as such, in the sense of an institution with rules and duties and obligations to the general public. They see it in terms of two particular interests: their need for help that delivers what they want in a reliable manner; and the relationship they have with the person standing before them, whom they need to trust and feel they have something in common with.
This short study has helped to illuminate the concerns of some of the older people using the service. It has reinforced the point that independence is more than a matter of performing certain tasks, important, or even vital, though they may be. Older people are consumers of services, as are others in society. They buy into things that matter to them. Not the least of these is independence. Though it is ultimately impossible to quantify in every respect, the participants in this study have shown that the support provided by the Help at Home service, particularity as it is represented in the quality of staffs employed by Age Concern, but also in the confidence that many people have in it as a trustworthy organisation, is an important part of their lives that delivers real value.
References
Audit Commission (1997) The Coming of Age – Improving care services for older people. London, Audit Commission
Cattan, M (2002) Supporting Older People to Overcome Social Isolation and Loneliness, London, Help the Aged.
Clark, H., Dyer, S., Horwood, J., (1998), That Bit of Help, Bristol, The Policy Press.
Department of Health (1998) Modernising Social Services, London, HMSO
Department of Health, (2000) The NHS Plan: A plan for investment, a plan for reform, London, HMSO
Department of Health (2001), Intermediate Care (HSC 2001/001: LAC ((2001)1), London, Department of Health.
Department of Health (2001) National Service Framework for Older People, London, Department of Health.
Langan, J., Means, R., Rolfe, S., (1996) Maintaining Independence in Later Life: Older People Speaking; Kidlington, Oxon, Anchor Trust
Le Mesurier, N (2002) A Human Touch: An Evaluation of the Concern for Older People in Ealing (COPE) Project. Birmingham, University of Birmingham
Le Mesurier, N, (2003a) “So much more than just walking!” an evaluation of a pilot programme of social rehabilitation projects provided by Age Concerns in five locations in England, London, Age Concern England.
Le Mesurier, N, (2003b) The Hidden Store: Older People’s Contributions to Rural Communities., London, Age Concern England
Letwin, H., (2001) Social network type and morale in old age, The Gerontologist, 41: 516 – 524
Sidell, M (1995) Health in Old Age, Buckingham, Open University Press.
Wenger, G.Clare, (1994b); Support Networks of Older People: a guide for practitioners; Centre for Social Policy Research & Development, University of Wales, Bangor; Gwennedd
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